Are you pregnant with a baby who will be born with Down syndrome? Are you sleepless and so scared that you can't see straight? Are you having trouble eating and completing the simplest of daily tasks? Are you considering aborting? Please, read my blog before you decide! The doctors will tell you all the bad stuff. Let us show you the good stuff! Please, let us show you just how wonderful these babies truly are! It's turning out to be quite a wonderful world with a baby with bonus chromosomes!

...And in the air, the fireflies, our only light in paradise. We'll show the world that they were wrong, and teach them all to sing along; singing Amen I, I'm alive. Amen I, I'm alive...

- Nickelback, If Everyone Cared

For All The Right Reasons Album

And I'm singing Aaa-ayyy-men, I'm alive!

William Leonidas November 12th, 2009

My only regret is that I cried so many tears while I waited for you.

"...I'll try ~ but it's so hard to believe. I'll try ~ but I can't see what you see. I'll try and try to understand the distance between the love I feel ~ the thing I fear ~ and every single dream. I can finally see it. Now I have to believe all those precious stories. All the world is made of faith ~ and trust ~ and pixie dust. So I'll try ~ because I finally believe. I'll try ~ because I can see what you see. I'll try, I'll try ~ to fly..."

Jonatha Brooke "I'll try"

Fear thou not, for I am with thee; be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10

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Now the word of the Lord came to me saying, "Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:4-5

For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. Psalms 139:13-14

Monday March 5th, 2010

So Why Stinkerie?

It's simple, really. It's the first thing I whispered against my newborn little Dumpling's temple as I held him alone for that very first time. "There's my Little Stinkerie." And all was right with the world as I brushed my lips across his delicate dewy soft newborn-pink skin and sniffed at his sparse smattering of downy soft hair. Corny and sappy, huh? I can't help it when describing my new Little Puppy. But don't get used to it - I have been told I am "irreverent."

Anyway, it just came out and he's been Stinkerie ever since. As well as Stink Pie, Stink Pot, Stinkey Pete, Little Stinks, Stinks, Puppy, Ducky, Baby, Baby Head, Baby Head Jenkins, Jack, Jack-Jack, Jackie Boy, Jax, Snork, Snorkis, Snorkle, Billy Boy, Billy Bob, Bobby Sue, Billy-Joe-Jim-Bob, Will, Willie, Willister, and the name given by my mentor turned friend Beth - Snake. When I write to her I call him either The Snakester or Slither! And of course, Dumpling, because he is my Little Dumpling - warm and soft and comforting. It's alright to combine comfort food with baby names, right? Have you ever watched the movie Where the Heart Is? If you have, you'll know why I mention this in my defense!

Long story short, you're likely to encounter any one or more of these names in a single post. Because I can. It's my blog!

Something to Consider

Bad decisions make good stories.

Something to Think About

With any pregnancy, there are concerns. With any child, there are worries. When you have a diagnosis of Down syndrome, you know what to worry about. You know what to look for. You have a plan of action. With your typical child, there is no limit to the things that can 'go wrong' or 'happen.' There's no place to focus your worry and concerns. 'IT' will always be out there, waiting. You'll always be on guard. Even when the child is 55 and has grandchildren. With Down syndrome we have a battle plan. With Down syndrome, there is a finite number of things that can go awry. With a typical child, there's isn't. It's a crap shoot. I'm sticking with the Ds and taking the other two back to the hospital for a refund.

Head Above Water

Friday, October 15, 2010

Another ST Evaluation

So back we go the medical facility for Jack's ST evaluation. They were waiting for us and we were shown right in to Linda, the ST. She watched Jack eat a bottle and took an extensive history. She also agreed that the pneumonia back in May was more likely aspiration than pneumococcal. When Jack was finished eating he spent his burping time charming her. In the end, she agreed to recommend a modified barium swallow study. And so we now have yet another referral to Children's.

"I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have trouble from me." - Dr Seuss

Stupid Leukemia!

This little dolly is battling Leukemia. Ella is currently on her 6th and final round of chemo! We're sending you love Ella! We continue to pray you all better!

Followers

We are not human beings going through a temporary spiritual experience. We are children of God, spiritual beings going through a temporary human experience. Bless someone's life today!

The movie in my head is sometimes so much better than the truth.
- The Incredible Miss S

I have never been a good example to anyone, of anything. No, but I do provide a valuable purpose in life by serving as a horrible warning. It's all in how you look at your gifts. For instance, I drive waaay too fast to ever be worried about lung cancer.

About Me

I am a third time Mom discovering that the world of Down syndrome just means different...in a good way! It's kinda like a trip to Narnia... There is magic and there are good guys and bad guys, but the purity of life must be preserved.

The R Word - Really? Is that the best you've got?

Cyrano responded to a man who had the temerity and lack of good manners to not only comment on the size of Cyrano's proboscis, but even worse to do so with a crippling dearth, a paucity of creativity:

"My nose is Gargantuan! You little Pig-snout, you tiny Monkey-Nostrils, you virtually invisible Pekinese-Puss, don't you realize that a nose like mine is both sceptor and orb, a monument to my superiority? A great nose is the banner of a great man, a generous heart, a towering spirit, an expansive soul - such as I unmistakably am, and such as you dare not to dream of being, with your bilious weasel's eyes and no nose to keep them apart! With your face as lacking in all distinction - as lacking, I say, in interest, as lacking in pride, in imagination, in honesty, in lyricism - in a word, as lacking in nose as that other offensively bland expanse at the opposite end of your cringing spine - which I now remove from my sight by stringent applications of my boot!"
- Edmond Rostand, Cyrano de Bergerac, Act 1

So you might want to rethink it before you call my kid a retard. Especially in ear shot of that Middle One - his vocabulary will have you rethinking your own IQ and mental acumen.

Things I Love

Crispy bacon Saturday mornings

That Jack used to smile but now chuckles when my fingertips placed against his nostrils produces a snort!

The 2" square of paper taped to my computer, lettered in black Sharpie by My Little Girl, "hear lies a 2 leged hores, the love of spiderman." She was six when she wrote that.

That Jack sucks his thumb!

Instead of pressuring me to move Jack-Snack to his own room, The Dear Daddy jokes about my excuses for not doing so yet

Those rare middle of the night feedings when it's just Jack and I in my big rocker

That I know My Beloved's heart is mine without question, always

When I catch The Oldests being kind to each other

My Girlie's laughter

The way My Middle Little spontaneously proclaims his love for me

My Girlie lifting sleepy arms to hold Willie while she wakes up every morning

That Grandma ME loves my children

Holding Willie while he sleeps

Baby coos

The way The Beloved always seeks out Willie first thing upon arriving home for the day

New pictures posted by friends in the Ds blogging community, most especially Nella and Pudge and Zippy

Dragon Hunters

Gwizdo was defending Zoe's honor to her mean Uncle Arnold:

"Zoe's right! You're really a loser, and besides, you're mean to little girls. You don't know Zoe! She's kind, she's courageous, she's intelligent and she deserves so much better than a dishonest, self-centered, miserly old uncle. And, with all the respect that I have for the boogers in my nose, I'd like to know what Lord Arnold the Butt-Wipe has to say about that!"

Yep. It's a kid's movie, and "the boogers in my nose" and the "Butt-Wipe" remarks just crack me up.